Friday, September 28, 2012

I've been writing sporadically these days, and I apologize to those who've been concerned about Queen Teen. I'm happy to report she's doing great. Still very tired, but back in school half days. The gagging has improved and she's eating well again. But most importantly, the sparkle in her eyes, the disdainful grin when her dad does something "silly" and the giggly laugh have returned.

It's been hard on all of us, but that girl is a wonder. While I've been racing around trying to keep life in some kind of order, she's quietly but steadily grown stronger. I've focused on stabilizing her health, getting all the supports in place, setting up more doctor appointments, researching Mito to try and understand her symptoms, while also starting another year of teaching. I've put all this energy into the crisis, unable to see the strength in her wobbly limbs. But I guess thats a mom's job sometimes; hurry and put out the fires before anyone can smell the smoke.

How do you not get lost in that battle? How do you keep perspective when the center of your life has collapsed and everything you hold dear is threatened?

Friends. Breathing. A garden filled with veggies you don't know how to cook. A glass of wine. Good dark chocolate. Meditation. Running. Self-compassion.

Writing used to be my anchor, but unfortunately I don't have much time to do that right now. It's frustrating, though. I'm filled with stories as usual but my daughter, my job, and my press require too much mental energy. I'm so tired at the end of the day by the time she's asleep, I'm crawling into bed too. I thought about deleting this blog because I just don't have the time to keep it up, but I've made some wonderful connections here with other special needs parents through their blogs, so I'll keep it going.

Fear is my enemy. It is large and dangerous and kicks me in the teeth at the most annoying moments, like when I'm driving the car to work and all of the sudden my heart constricts with grief. I think I'm fine and then: wham! It's exhausting trying to keep up my guard and stay focused on the positive so fear doesn't overtake every moment of my day.

I seem to be getting used to the fear, or at least making peace with it. I don't deny it, I just try not to feed it. Yesterday I realized that my whole world has been reduced to controlling the fear, so much so that I have become unable to see the good things in my daughter's life. I have "fear goggles." All I can see is what she's lost, not how much she's thrived. In March she couldn't eat. In September, she eats hamburgers. In May she weighed 79 pounds. Today she weighs 88. This summer all she wanted to do was rest on the couch watching movies. Now, after a short rest, she wants to do something, usually go for a walk or shop or play a game. In August she was late to school every morning. It's almost October and she usually gets to school on time and will start riding the bus again.

I took off my "fear goggles," looked around, and saw my daughter.

We still don't have any answers and the future is enormous and scary. Her life will be short, but how short, we don't really know. Today she is in the 11th grade, loves neon colored clothes with lots of bling, is giving her new sitter a hard time, tries to manipulate me to do everything for her, fights with her dad a lot, is easily bored, and hates going to the doctor. She can run her iPad on her own and can't wait for our Disneyland trip in November. Her cousin is still her favorite person in the world.

Thank you everyone for your continued support and comments. It really helps.

Thursday, September 6, 2012

I don't know what it is about August, but it has always been hell month for me. It's not just the unending heat or the way my skin bristles every time the too bright sun touches it; life tends to triple its speed in August until I'm utterly worn out. By the time August ends, I am longing to hide in a cool bath in a dark room far, far away from telephones and to-do lists.

This August was no exception. Queen Teen had two trips to Stanford, plus a muscle biopsy (more on that later). Her recovery was good, but slow, and I got to battle with three different agencies for a shower bench (more on that to come later as well). I was frantically trying to finish the new website for Medusa's Muse before I went back to work (didn't make it). And then school started; I went back to teaching and she started the 11th grade. Rick and I juggled my return to work and QT's reduced school schedule (half days for now) with our usual strategy: take it day by day and stress out the entire time. Thankfully a good friend has helped out while I continued to look for regular child care

Now it is September and we are all starting to settle in to our new schedule. I harvested the basil this weekend and am making several pounds of pesto to enjoy this winter, and this year we enjoyed our first delicious crop of table grapes from our 8 year old vines. The summer was stressful because of the changes in Queen Teen's health. But it was also oddly peaceful. When I look back on the last few months, I see just how lovely our summer was (except for that dreaded August). And I learned some very important things.

What I learned during Summer vacation.

Tomatoes need consistent watering or their skins will crack and the fruit become misshapen.

All those late nights and extra hours I spent teaching are totally worth it if I can have summer off.

It is important to spend time doing nothing. If you fill your days with tasks and to-do's and constant business, you never have time to truly enjoy being alive. Sit in your yard every day with your shoes off and watch your garden grow while listening to the humming birds fight over the flowers.

Doing the above is even nicer with a glass of good wine.

Creating a peaceful space in your home, a place where no work is allowed, is very important for mental health. This space is even more helpful if you create it in your bedroom.

Reading a book on a Kindle is fun.

Going to the mall with a typically developing teenage girl is fascinating, especially when you turn that girl lose in Abercrombie and Fitch.

Having Queen Teen's best friend with her when Queen Teen had to get her biopsy made everything much better. We should always bring a friend (and not just one of my friends).

In-laws who will paint your bedroom and clean your kitchen are the greatest gift there is.

Running feels good.

A slower pace to match Queen Teen's lower energy is kind of a gift. Stress was reduced because she wasn't begging to do things all the time, and when we did go out, she seemed to enjoy it more.

Sharing time with a person who is ill teaches you not to take things for granted. I know we've all heard that before, but when you're caring for your child who is struggling so much just to walk or eat, you realize how wonderful each moment of your life is. This child is precious and beautiful, and her time on this Earth is limited. We don't know how long, but I know I will out live her. So enjoy the days, the accomplishments, the set backs, the laughs. Enjoy and savor each breath. We all have limited time; don't waste your one beautiful life.

But remember, enjoying your life doesn't mean filling it up with accomplishments. The time you spend with your family is far more important than what you think you need to achieve.

Working with your hands, rather than only with your brain, is extremely relaxing.

Curious George is hysterical.

Pumpkin plants need a lot of feedings if you want to make a pumpkin pie this fall.

My daughter was born with visual, hearing, and motor impairments, so learning to walk was a difficult task. She used to fall down all the time! We started calling these falls a "Gravity Check," which made her laugh, get up off the floor, and try again.

Her Royal Highness, Queen Teen

This is Queen Teen, age 15. The little girl jumping on the bed is Queen Teen, age 4

About Me

Playwright, author, gardener, Super Mom, Johnny Depp fan and struggling Buddhist. Seriously, I really don't need to reach enlightenment in this life-time, so could you back off a little on the dharma lessons?